Tapering HELP please!!!

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Jen77
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   Posted 5/17/2008 8:38 AM (GMT -7)   
So I'm on 40mg of Pred. That GI that I won't be going back to, wanted me to get down to 20 mg in one week, and then stay there for a few weeks (since I'll be out of town). I'd like to go slower then that!
 
But I have no clue on how to go about this. These are 20 mg tablets, so I guess I can break them up in to 4's if need be? Then come down 5mg a week? I have no idea why he couldn't have given me smaller mg pills so that I could have done this easier.
 
In all honesty I'd like to just stay at 40mg until I get back from vacation. Since I am improving but not out of the flare yet anyway (I haven't even been on it for 2 weeks yet). Tapering right before going on a trip sounds scary to me. I'd rather do it close to home in case something happens. But I don't know if it would be safe to stay on it at 40mg for another 3 weeks, then start tapering? I have no idea what the usual length of time people are on the higher dosages?
 
Really would have been nice to have a good doctor on this stuff. Ugh. Any help is MUCH appreciated!
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Predisone 40mg, and Asacol.


Mike W
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Date Joined Aug 2006
Total Posts : 89
   Posted 5/17/2008 9:28 AM (GMT -7)   
I guess ideally you would find a new GI before you change anything. How quickly do you think you can find a new one?

Ya 20mg tablets are a dumb idea. 5s are good or 10s at the most. I don't know if you could cut the 20's into quarters consistently enough to get a correct daily dosage? The 5's I have are very tiny.
Diagnosed in 1999.
No surgeries.

Age : 31

Currently on 75mg 6mp and probiotics.


chroniemomx2
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   Posted 5/17/2008 9:29 AM (GMT -7)   
Since you haven't been at 40 very long, you probably won't have a problem going down to 20. If you do, you can always go back up to the 40, or try 30 first. Yes, you could stay at the 40 for another 3 weeks...you are going to start getting more side effects if you do. I was on 60 for a couple of months before I started tapering.

CAMEID
New Member


Date Joined May 2008
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   Posted 5/17/2008 9:43 AM (GMT -7)   
have you ever tried low dose naltrexone? studies at hershey seem promising
 

Jen77
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   Posted 5/17/2008 9:45 AM (GMT -7)   
So since I haven't been on it that long, it's pretty typical to go from 40 to 30 one week? And then 30 to 20 the next? I'm also not sure how I could cut those in to quarters perfectly either. He just wants me to start cutting them in half and go down. I always see others going real slow, but maybe they've just been on it longer?

This is just awful timing, with our vacation coming up in 2 weeks. I don't want to go backwards with this flare or get sick from tapering while I'm in another state! But I would like to minimize the side effects too!

It's gonna be a while before I can get a new GI. It's most likely going to have to be within that same group (only one my insurance covers). Which they give you TONS of crap for even ASKING to switch. I've known someone else that was denied switching from the same docctor I have. Then most are booked out for months to get in to see them. So it's gonna be a battle.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Predisone 40mg, and Asacol.


sr5599
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   Posted 5/17/2008 9:56 AM (GMT -7)   
Did you tell him you'd be more comfortable staying at 40 until after your vacation? You could try calling Monday (I know he's kind of a "slow" responder and a bit spacy, but...) that could ease your conscience if he just says ok.

Also, yes, you are probably ok to taper 10mg per week at that dose and for how long you've been on it. It's when I get to the lower doses that it seems to really hit for me. But I completely agree with crohniemomx2 that you can try the taper and, if you feel problems starting, go back up by 10 mg (to 30). I bet you would be fine even at 20 for your trip. That's not a super low dose and might keep some of the side effects (moon face, sleep issues) at bay.

Good luck!
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl


Jen77
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Date Joined Mar 2006
Total Posts : 2690
   Posted 5/17/2008 10:34 AM (GMT -7)   
Yeah I told him about my concerns with tapering and going out of town. He still thought it was best to get me down to 20 this week, and then see how I do before my trip. That way he said if I started having flare symptoms again that I could just call and then he'd see about going back up to 40 for while I'm gone. He thought 20 would still work, and that way I wouldn't have side effects.

So I think I'm going to go down to 30 for this week. Not down to 20 in one week though. Then see how I am this week, and then go down to 20. Scary, because I don't want any problems while I'm gone. But hopefully 20 will still be a good enough of a dose to keep me okay.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Predisone 40mg, and Asacol.


chroniemomx2
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   Posted 5/17/2008 12:29 PM (GMT -7)   
Sounds like a plan! Remember, you can always go back up to 40 if you need to on your trip. Relax, and have fun!

Jen77
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Date Joined Mar 2006
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   Posted 5/17/2008 2:30 PM (GMT -7)   
That's true, and I'll have enough to bump myself back up to 40 mg if I need to on the trip. I talked to my pharmacist today when I picked up my prescription of pred (so that I won't run out while I"m gone). He started talking about my knowing that I'll need to taper, and I told him yes, that my doctor wants me to go down by 10 mg at first. He said that was pretty common. So that made me feel a little better.

Even if all I can get down to is the 30, guess that's better then 40 right? Ah, I so need this vacation after the month I'm having. LOL
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Predisone 40mg, and Asacol.


gachrons
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Date Joined Mar 2007
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   Posted 5/17/2008 3:28 PM (GMT -7)   
Hi Jen I think 20 might hold you it is still a fair amount of pred. lol gail

PaloPalo78
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Date Joined Feb 2008
Total Posts : 42
   Posted 5/17/2008 4:13 PM (GMT -7)   

I often take longer to taper down than the gi suggests and when i go back to see him and report what dosage im on he never objects ..

I also ask for some 2.5 mg pills to make the tapering as smooth as possible , i.e go from 20 to 17.5 for a few weeks and then to 15g etc etc

sometimes we can go from experience and not from what the text books or docs think is best , and i guess as long as you do taper down and dont stay at a constant dose then it is progress. Its not good to stay on pred for longer than needed but also not good to come off it too quick and relapse

Also ive noticed in the many times ive tapered down from a course of pred , that initially im fine reducing the dose but then it kicks back at me a week or so later and i have to either ride it out or sometimes go back on the last dose for another week or so and try again

another thing ive found is that when the dose gets down past 15-10mg i start to be aware of the side affects becoming much less and my body gets back to being mine again ! - in which case i take it even more slowly with the tapering .

 

 


Jen77
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Date Joined Mar 2006
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   Posted 5/17/2008 4:48 PM (GMT -7)   
I'm hopeful I can be okay at 20mg. Guess I'm still worried about going from 40 to 30 in one week. Then from 30 to 20 in the next. Seems like big drops, in just two weeks. Espeically if it can take a days to start feeling the effects, that will put me out of state! But I have no idea if cutting these pills in to fours and coming down 5 mg at a time would be better? I doubt I'll get him to give me 5mg pills, since he's big on me dropping by 10's.

Or am I just worrying too much, and it's usually typical to drop 10 mg a week when your on a higher dosage, and then go slower once you get down further? Ugh, this is all so new to me!
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Predisone 40mg, and Asacol.


Jen77
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Date Joined Mar 2006
Total Posts : 2690
   Posted 5/18/2008 1:29 AM (GMT -7)   
Anyone else care to share their tapering experiences? Just wondering if anyone else has dropped their dosage to 30 mg from 40 mg, in a week, and how they reacted to it?

In the morning I'll go down to 30 mg, fingers crossed. If all goes well I may just go down to 25 mg the next week, and stay there until I get home from vacation. I may feel more comfortable with that then just dropping another 10 mg, down to 20. Once home I can go down to 20 mg, and of course get in to my primary doctor and see what kind of tapering he wants me to do from there (and battle to get a new GI). It's just so hard, if I didn't have this vacation planned I wouldn't be as worried. If I felt bad I could just stay home! But of course Crohn's doesn't care about your plans!!

I apologize if I'm being a pain! It's almost 2 am, and even though I took my pred at 8 am in the morning, I'm still awake!


~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Predisone 40mg, and Asacol.

Post Edited (Jen77) : 5/18/2008 2:44:11 AM (GMT-6)


sjkly
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Date Joined Dec 2007
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   Posted 5/18/2008 12:45 PM (GMT -7)   
I was on 30 mgs a day for 40 days (my pcp put me on it while I was waiting to see a new Rhuemy) Rhuemy was horrified I had stayed on that dose so long and had me taper to 20 for three days then 10 for three days then 5. I did fine with that. She kept me on 5 since we are waiting for maintence drugs to kick in. We tried to taper after adding one maintance drug we were going to go 2.5 for three weeks but I flared immediately so back to 5 added another maintance drug-might taper again after next appointment but I will ask for 1 mg pills to do 4.3.2.1.taper.
Sj

Jen77
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Date Joined Mar 2006
Total Posts : 2690
   Posted 5/18/2008 1:13 PM (GMT -7)   
That's good to hear sjkly! I guess I just need to play it by ear and see how I do. I very well may get to 20 mg before we leave on the trip. But I just may go down 5mg each to get there. Not sure, gotta see how I even do at 30 mg for this week! Guess it's a wait and see game!
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Predisone: tapered to 30 mg, Asacol, Questran, Toprol XL (for high blood pressure).


SallyC
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Date Joined Nov 2004
Total Posts : 158
   Posted 5/18/2008 1:28 PM (GMT -7)   
I usually go from 40 to30 in about 3 weeks then 2-3 weeks later down to 20 and from there it is about every 4-6 weeks I taper by 5mg. Good luck to you!
Sally
Sally
 
Diagnosed with UC in July of 2003 then diagnosed with Crohns in August of 2006.


Brig
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Date Joined Apr 2008
Total Posts : 33
   Posted 5/18/2008 4:57 PM (GMT -7)   
My GI would never let me taper so quick. I have to taper each 2 weeks 30, 25, 20, 15, 10, 7.5, 5, 2.5, then 0. I am currently on 6MP and 5mg pred and not doing too badly. I am really hoping I go well to 2.5 then 0 so I can have a break from the pred

Jen77
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Date Joined Mar 2006
Total Posts : 2690
   Posted 5/18/2008 5:27 PM (GMT -7)   
See that's what is so confusing. Some seem to go down quicker then others. I'm afraid I've gone down to 30 too fast even. This was a really bad flare for me. With my set rate at 76 (with normal being 20), swelling of the joints/lip. Diarrhea of course, 10+ times a day. It's so scary coming down 10 mg at a time to 20mg.

I think I would have been more comfortable coming down 5 mg each for even two weeks really. As much as I hate pred, I hate that flare even more!
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Predisone: tapered to 30 mg, Asacol, Questran, Toprol XL (for high blood pressure).


lovepink
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Date Joined Sep 2007
Total Posts : 182
   Posted 5/18/2008 5:53 PM (GMT -7)   
Really it depends how bad you are! I am in your same boat (except for the fact that my doctor is great) and if I were YOU! I would go on vacation and stay on what you are at. But really it is YOU who has to make that decision. What I do is this: What is harder to live with right now, my Crohn's OR the temporary steroids side effects (which do suck a lot) But it is sorta like choosing your battle on this one. Never Fun! But go on your vacation with the confidence that you will make it and you made a good decision!

So much good luck to you!

LOVEPINK1010
I have had Crohn's since I was 21 years old and I am now 27....

On HUMIRA....


Jen77
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Date Joined Mar 2006
Total Posts : 2690
   Posted 5/18/2008 7:11 PM (GMT -7)   
You are so right lovepink. I was just saying that to someone too. Basically it's a matter of choosing between the flare and side effects, gotta pick which one you find worse! Neither are going to be great!

I dropped to 30 today and have had 3 more bowel movements then yesterday, and some cramping up again. So I'm going to go back up tomorrow. I think I'll feel safer going down 5mg at a time. That seems to be the most common in everything I'm reading too. This has probably been the worse flare I've ever had (next to when I severly bled). I think it's more important to do this the right way, get it under control, and not flare back up. The side effects stink, but I think I'm doing well enough so far to taper a little slower. Thanks everyone for all the advice!
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Predisone: tapered to 30 mg, Asacol, Questran, Toprol XL (for high blood pressure).


sjkly
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Date Joined Dec 2007
Total Posts : 2113
   Posted 5/18/2008 7:32 PM (GMT -7)   
Jen, with your sed rates that high-did they repeat them before having you taper-I would not taper at all until my sed rates were down. I think you 're right though you have to do this sanely-I tapered as quickly as I did because I did not flare again during the taper-my rhuemy had told me that if at any point I was in pain to go back to the previous level.
Go on vacation, relax, let the reduced stress help bring down your sed rates then think about tapering.
Oh and have fun on your trip.
Sj

Jen77
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Date Joined Mar 2006
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   Posted 5/18/2008 9:38 PM (GMT -7)   
Thanks Sj, I'm gonna take that advice! :) No, they haven't repeated any blood work yet. My primary figured my GI would do it, but said he'd redo my blood work after I tapered completely off. I think he was just figuring to keep tabs on me. Hoping my GI would be doing right by me. I saw my primary two days before seeing my GI. My primary was giving me all kinds of instructions on staying out of the sun, wear a hat, keep hydrated ect... because he planned on me being on steroids like this during my trip! I think he'd be surprised to know the GI wanted me to cut the dose in half in one week. Even though I still wasn't feeling well, and my sed rate so high.

Once I get back I'll get in right away with my primary and get a tapering plan going, including more blood work (oh and a new GI). I think that's the best plan of action for me.

Oh and I also plan on calling my not so wonderful current GI to let him know that I'm not doing well tapering. That way at least he'll know that I'll still be on the higher dose. Not that I have a lot of faith in him helping me further, but I'm really trying to do everything by the book!


~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Predisone: tapered to 30 mg, Asacol, Questran, Toprol XL (for high blood pressure).

Post Edited (Jen77) : 5/19/2008 12:25:03 AM (GMT-6)


Nanners
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Date Joined Apr 2005
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   Posted 5/19/2008 6:29 AM (GMT -7)   
Anytime I have been on Pred my reduction was usually down 5mg per week. I have never had any problems going down at that rate. Down 10 mg a week sounds really quick to me. JMHO
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


bektold
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Date Joined Jul 2007
Total Posts : 456
   Posted 5/19/2008 7:36 AM (GMT -7)   

My first time on Pred, the doctor had me drop from 60mg to 40.  When I mentioned that i was really tired for a few days after, he told me the change in Pred couldn't possibly be the reason.  !!!  I don't see that guy anymore.  nono    My current GI has me drop 10mg at a time until I get to 20mg, and then 5 at a time after that.  He's open to going slower if necessary, but I've been OK at that rate. 

It's been about a week and a half since my last dose of Pred, and I'm still struggling with headaches, muscle pain, and being tired.  I could talk to him and go back to 2.5mg, but at this point I should be through the worst, and I don't want to have to go through this all again in another couple of weeks.


Bennie
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Date Joined Nov 2006
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   Posted 5/19/2008 10:41 AM (GMT -7)   
My daughter is at 35 mg now (started at 60 mg). She has UC and flared in March. (My son has Crohns so I check in here too.) Anyway, this is her 3rd flare and 3rd time on prednisone. Once she started lowering, she lowers by 5 mg per week. We check in with the doctor once a week to discuss how she is doing. He tried to have her lower from 50 to 40 mg but the side effects were too much for her so he changed it within 3 days to 45 mg. When she gets to 10 mg, she will probably go to 5 mg for a week and then every other day after that. Slow and steady. Unfortunately she has all the side effects (and they seem to get worse with each round of prednisone). It also seems that it takes longer for each round to start working. We are now looking into surgery for her.

--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day, 35 mg prednisone, Remicade
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!

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